Does it seem like autoimmune diseases are on the rise?
I read an excellent article in AARP Magazine. “The Rising Toll of Autoimmune Diseases in Older People” https://www.aarp.org/health/conditions-treatments/info-2021/autoimmune-diseases-rising.html. It talks about why AD are on the rise and why the elderly are especially vulnerable. Excellent article!
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@4200wishyouwerehere. I’m so sorry to hear this. Yes, autoimmune diseases can be devastating to everyone. There are also called the invisible disease because know one knows about the, including doctors. There is lots of research happening, but treatments and cures will probably never happen in our lifetimes.
Please accept my condolences and tell others to come here if they need help.
Thank you @becsbuddy. Some good tips. The title of the website is so appropriate for people with autoimmune diseases. I get pretty tired of people telling me how good I look! I know they mean it in a nice way, but sometimes I just want to respond, “thanks, but I feel miserable and in constant pain, with numb tingling extremities, a sore throat I’ve had for months, fatigued, etc.!
Yes it amazes me too. Also that they can't tell me what Auto immune disorder. Only ones that are related. Like sagorene. Frustrating. Seems like mostly women too.
@sammym1963 Were you diagnosed with an autoimmune disease? Or do you feel like you have one but can’t get a diagnosis? Maybe you could tell me a little about yourself. What do you mean by sagorene?
Do you mean Sjogren's?
I hear you-I have full body tingling,fasciculations, burning-numbness and pain. Every time I try to wrap my head around this body I don’t recognize some new strange body symptoms appear. I forget what a wonderful body I had just a year ago felt like.Even my head buzzes and my legs and toes cramp. No answers from doctors except maybe-“Chronic pain syndrome”-I have no injuries or notable spine issues. The worst is that I look fine-I feel like people think it is psychological. -but you look so good they say-I stopped trying to tell them about this because they don’t understand. They are kind but say things like -It’s been a stressful time”-ugh. My doctors are receptive and I have had many tests-all normal except low IGM which is normal for me-not the average person. I appreciate these articles. Very interesting and notable. I know something is terribly wrong with my body-I’m scared one day it will reveal itself and It won’t be good. For now-the doctors only know what it isn’t. I am sure it is neuro-my body feels like it is firing off all signals like wires crossed. I feel it is autoimmune. I wish you relief -hope-and answers❤️
I’m very sorry to hear your struggles. I’m glad that I mostly know what’s causing all my neuropathy and pain, it’s just that I’ve not found anyone to help treat it yet.
Are you seeing a neurologist? They actually seem to be aware of the effects of different autoimmune diseases. I just saw a neuromuscular neurologist who thinks my symptoms are due to damage to my spinal nerve caused by a confluence of two autoimmune diseases I have, liver disease I developed due to one of them, and an immunosuppressive medication I’m on because of the liver transplant I had last year. So, I’m having an MRI at the end of the month on my spinal column which I’m hoping might reveal some sort of treatment.
You’re completely correct in your assessment of not recognizing your on body. I hadn’t been on any medications and pretty much perfectly healthy two years ago, worked 50 hours a week, active, eating healthy, etc. I’ve read so many testimonials from people with autoimmune diseases which express this same thing. And, like you many haven’t had a diagnosis yet.
Because I wasn’t getting anywhere with the Rheumatology Dept. at one of two regional hospitals within a few hours drive, I sent an email to the head of the Rheumatology Dept. at the other regional hospital. They responded and I now have a referral to be seen by them.
So, don’t give up, believe in yourself, and know there are so many people, mostly women, who share similar pain and symptoms. Be a strong advocate for yourself. Connect is a great community of patients like us. And, I’ve found it helpful to make note of people with similar symptoms and potential treatments that have helped others, as I wait to find a provider that is willing to work with me and help me.
May you find the same! I know that there is no cure for neuropathy, but there are things that can help. And, while there are some good treatments for the better known autoimmune diseases out there, there are so many that have little or no treatment. I’ve switched my diet and I exercise as much as my body allows in an effort to at least help reduce inflammation in my body and keep it moving. Have you found anything that has been helpful? I take Gabapentin, which does little for my pain, but does help reduce the sharp nerve pains I was getting and it helps me sleep.
@johnbishop posted this video about a young woman’s journey to find an answer to what was wrong with her. If you haven’t seen it, you might find it insightful. I know I did.
Thank you so much-yes-I am seeing a neuromuscular neurologist at Yale in Ct. I have had 3 MRI’s including the spine. They were unimpressive and determined to not be the cause of my symptoms. So my journey continues. I heard your words-“Don’t give up”-and I have heard my GP doctors words-“ You can spend your whole life looking for an answer so just let me treat your pain”. I agree with you but I let my Dr. Try and treat my pain 900mg if gabapentin and 30mg Nortripline. It helps me go out snd about but I’m with this body and all it’s crossed wires. It’s like having an epidural when you give birth. You can tolerate the pain but you still feel what is happening to your body. Only in this case it scares me. Everyday when I open my eyes I pray it left the same way it appeared suddenly and I can recognize my body again. I will send prayers your way-I watched the video and feel blessed with your encouragement. Stay well-❤️
Another great article about women and autoimmune diseases!
An intersting article, @becsbuddy! I wonder of the two years between the article and now, has seen additional research. As the one person said, ideas need to be proven out with more concrete studies and comparisons. But definitely an interesting theory!